[Poetist]

Well, I took the advice of others on this board, and I went to a clinic that only specialized in MG patients. For the first time, I saw MG patients in the flesh.

The welcoming was quite nice, and there were two doctors on staff. The older doctor was better of the two and more favored.

Tell me why did I end up with the lesser desired doctor?

It was just my luck, but wait my luck gets better!

Anyway, I had a falling out with the lesser doctor, because I did not speak too kindly about one of the neuros who saw me.

It was the very neurologist that I only saw ONCE and quickly replaced with another doctor. Little did I know that lesser doctor and the neurologist I saw only ONCE were good acquaintances.

He was determined to protect her good name. (FYI: she is a very pretty doctor, and they come from the same country). That was when I had about had it.

I had to tell him this woman did not once look at my chart and made medical suggestions, such as shouldn't you be seeing a lung doctor, get a sleep study, get a MRI, and etc.?

I asked him, what doctor does not review a chart before the patient arrives -- if not before at least briefly in the patient's presence. He did not respond.

My visit went from discussing my enlarged thymus to the doctor questioning my MG diagnosis, which I finally had three doctors confirming, one with more credentials than his.

I told the doctor I did not care about the MG diagnosis; he did. He said I should have the right diagnosis. Plus, he said he never heard of a patient having asymmetrical weakness, with the exception of ocular asymmetrical weakness.

In part, I agreed with him that I should find the right diagnosis, but I wanted to know whether or not I should have my thymus removed which has 5.7 cm of tissue on it. I fear that if what I have is not MG than it must be some tumor, because that was what I found out from my research. That was my primary concern, but we got in a heated discussion about how I thought his doctor friend sucks as a doctor.

If he was so concerned about my health, he should direct me to the area I should be looking into, if it is not MG, in which I welcome.

Anyway, cooler heads did not prevail.

I guess I kept in what I thought of pretty doctor, and when he mentioned how stellar of a doctor she is, I blew it.

This was the very doctor, who told me to sleep on a tennis ball, because I had trouble breathing at night. She just did not get how I feared not being able to wake up at night.

After I walked out of the MG clinic, I really did not want to return, but the MG patients consoled me and told me that lesser doctor has a tendency to tell patients that they don't have MG and was not the best. They gave me hope that perhaps I can see the good doctor.

I will give it another shot. I hope to see the other doctor, because I will walk out if I see that jerk. My time is too precious to sit with doctors who do not address my concerns.

The good thing is that I think I'm developing a new attitude. It's slightly aggressive and too the point. I just wish I had more facts to back what I've read on the internet.

Friday, I will go to my HMO's neuro-muscular specialist for my scheduled visit and to make an appointment for another round of MRIs to monitor the tissue on my thymus.

Sometimes, I am so sick with all of this, but I just wish doctors will get off of their high horse and just listen to patients. I don't give a flying flip about a diagnosis as long as the medicine is working, because I have come to grips that I will always have this weakness. What I can't have compromised is my breathing.

[Annie59]

Amen to the breathing remark you made.

I had a local neuro attack me visiously and not even examine me standing clear across the room yelling at me. What happened was which I finally got out of him was he thought I had been pissy with my respected and very mild mannered family doc. I remark I made in the morning to staff at the hosp was written up as if my doc didnt come see me I was going to leave the hosp. Wow!! What someone else can do with your words.

What it was was that I had been admitted the day before for change in symptoms and they walked me around causing my breathing to get worse. I was scared and sick and not much sleep. In the morning the kept food away saying I was gonna get tests. Then that changed with no explanation. I was told my doc would see me before he went to his office but I saw the clock get late enough that I knew he hadnt done that. I wanted to go home if no tests were being done as if I am trying to recover I am better at home with my humidifiers for my dry and my comfey bed and couch and privacy. So I asked staff if he was still coming at some point. And I had asked if tests were still planned as I had been bought food. I got alot of I dont know. I finally said in a perfectly nice way that if my doc wasnt gonna do any tests I would like to do home. I could have added more by saying I would be more comfortable there. I wasnt snippy or anything.

The neuro that came to consult was furious that I had told my doc that if he didnt show up I was leaving.........Oh my gosh!! I had to yell back at him as he was yelling at me making me out to be an ogre! I said I love my doc I would never do him such a thing. He was so furious we never really did any exam and even after I told him I hadnt done that he was argumentative. I finally looked him straight in the eyes and yelled "all I want is my life back, my family my job!!" That turned it around. He heard me and believed I wasnt who he had thought. He then suggested that I give up on the university and go to the state capital city or Kansas City for a fresh consult.

Sorry you had this.

Annie59

[AnnieB3]

Well, they don't exactly teach doctors manners in medical school. Or how to keep prejudice out the doctor-patient relationship. Not to mention that they discourage them to even think the words "I'm sorry."

Poetist, I'm sorry things did not go well. Try to imagine if someone came into the office where you work, said what you were doing and saying was wrong and then proceeded to attack one of your colleagues. No, I'm NOT defending this neuro because he should have been able to handle questions and criticism, especially when it sounds like it was deserved. But HOW we talk to doctors is so critical in how they treat us in kind. Again, I'm not saying that this was your fault!!!

I've only known a couple of neuros who can handle an open dialogue with patients. You should know that they are ALWAYS on the lookout for a potential lawsuit. That is why they gang together and defend each other at all costs. It's a ridiculous way to do business, not to mention it completely shuts down any useful conversation with a patient and only ends up adversely affecting their care.

You probably had so much pent up frustration that it couldn't be kept in anymore. I totally relate. I honestly wish I could've "gone off" on a couple of the neurologists I've seen in the past.

They don't teach us patients how to talk to doctors. I think we need to treat them like they are stuck in the logic and thinking level of an elementary school kid. When they say "Sleep with a tennis ball" we should repeat it back to them, like Ally said. Then ask them why sleeping with a tennis ball would help restrictive breathing caused by weak muscles. Then ask if she has tried that and if it's worked. Or what clinical studies she can point to so that we can read about the benefits of yellow rubber for MG. Or why a tennis ball instead of a baseball. Or say that you're so poor that your mattress already feels like a bunch of balls.

Yeah, I'm angry on your behalf. I've been through so much prejudice and outright nasty behavior from neurologists that I actually expect that. I've never encountered such horrid behavior from anyone until I met neuros. I'm at a loss to even explain it. There's no excuse for it.

I hope the other guy gives you the care you deserve.

Annie

[Annie59]

"Or say that you're so poor that your mattress already feels like a bunch of balls." Thanks for the laugh Annie!! I didnt think I had one in me today but you did it. It felt good.

Annie59

[Poetist]

Poetist, I'm sorry things did not go well. Try to imagine if someone came into the office where you work, said what you were doing and saying was wrong and then proceeded to attack one of your colleagues. No, I'm NOT defending this neuro because he should have been able to handle questions and criticism, especially when it sounds like it was deserved. But HOW we talk to doctors is so critical in how they treat us in kind. Again, I'm not saying that this was your fault!!!

I get what you're saying, but I didn't come out blasting his pretty doctor friend. He saw that she was one of the three neuros who saw me, and he kept trying to find out why I skipped over her.

I told him she was the first neurologist I saw, whom I saw only once.

That was when I began to chat about my medical history, and he began to examine me.

Afterward, he said he wanted to know what the pretty doctor said to me, as if he could not read the printed document.

I told him she told me to sleep on a tennis ball.

This answer was not enough for him, and he said he respected Dr. Pretty, as if she did not make that statement or something.

That was when I pretty much said what I pretty much thought of Dr. Pretty.

I gave facts like not reading my chart and ordering up stuff that was already performed, in which he did not have an answer for, because he was floored.

That was when he blurted out that Dr. Pretty was a good acquaintance of his, and I told him he can personally deliver to Dr. Pretty what I thought of her.

I've only known a couple of neuros who can handle an open dialogue with patients. You should know that they are ALWAYS on the lookout for a potential lawsuit.

If they just do their job, they would not have to worry about law suits, because they will definitely happen if you give a patient a reason to sue. Defending another doctor, who doesn't even work with you, is not what I need them to do.

They don't teach us patients how to talk to doctors. I think we need to treat them like they are stuck in the logic and thinking level of an elementary school kid. When they say "Sleep with a tennis ball" we should repeat it back to them, like Ally said. Then ask them why sleeping with a tennis ball would help restrictive breathing caused by weak muscles. Then ask if she has tried that and if it's worked. Or what clinical studies she can point to so that we can read about the benefits of yellow rubber for MG. Or why a tennis ball instead of a baseball. Or say that you're so poor that your mattress already feels like a bunch of balls.

That's a great idea, and I will definitely use that strategy. Too bad, I can't use it on Dr. Pretty, because she totally deserves it in a way. I mean she has a good bedside manner, but then she totally did and said stupid stuff to override any positives she possessed.

[shalynn]

I'm sorry you had a bad experience with the neuros. I have had more than my fair share of troubles with them too. One neuro tried to tell me that I was making my eyelid shut on purpose. I don't think I'm that talented.

There's a good book out called How Doctors Think. I believe it's written by Jerome Groopman. I found it to be very interesting. I think anyone diagnosed or those going through the diagnosis phase of a chronic illness should read it.

Shalynn

[AnnieB3]

Poetist, I wasn't at all putting you down, so I hope you don't think that! I was trying to show how "they" think and see patients. It's truly sad that they can't simply "practice" medicine.

I've had two situations where doctors do that "but I like Dr. So and So." It is doctor code for "I will back that doctor up if you ever choose to complain about her or sue her." They are literally given things to say and how to say them, as if they can't think for themselves.

You don't know me very well, so you probably don't know that I've written a book on doctoring because of all the crap I've been through. My sarcasm was not directed at you at all!!! Doctors have the lions share of power and they often abuse that power. No one deserves that. You were treated poorly because you dared to question a doctor who said you should sleep on a tennis ball. I mean, why not a golf ball or a ping-pong ball.

After all of their schooling, what they really need are a few courses on manners, creativity and socialization.

Annie

Shalynn, I almost couldn't stomach that book after just browsing through it! I only wanted to see how he approached the topic and didn't want it to influence my book. It was like one long massive rationalization for why patients get it wrong and doctors are close to Gods. Just my take on it. Glad you liked it.

[shalynn]

Annie, Well, it has been a long time since I read the book. Perhaps I should review it again. Seriously, I do think I got something out of it, but I have no doubt that you are most certainly correct in your take on it. Maybe I was reading it with my rose color glasses on.

If you don't mind me asking what is the name of your book? You can message me privately if you'd like.

[catie]

Poetist,
I'm sorry for what you've been through. Unfortunately this happens to too many patients. Sometimes it's hard to pick yourself up, brush yourself off and keep advocating for your needs.

I've had absolutely horrendous visits with several neurologists and those are hard to forget, even 5 years down the road. It floored me the things that they would say to me and in such a disrespectful manner. I also noted that these type of comments were not made (for the most part) when my husband attended the appointment with me. Go figure!!

I hope your next appointment goes more smoothly with the other physician. All patients deserve to be treated with compassion and respect.

Cate

[TRESA]

Originally Posted by Annie59

Amen to the breathing remark you made.

I had a local neuro attack me visiously and not even examine me standing clear across the room yelling at me. What happened was which I finally got out of him was he thought I had been pissy with my respected and very mild mannered family doc. I remark I made in the morning to staff at the hosp was written up as if my doc didnt come see me I was going to leave the hosp. Wow!! What someone else can do with your words.

What it was was that I had been admitted the day before for change in symptoms and they walked me around causing my breathing to get worse. I was scared and sick and not much sleep. In the morning the kept food away saying I was gonna get tests. Then that changed with no explanation. I was told my doc would see me before he went to his office but I saw the clock get late enough that I knew he hadnt done that. I wanted to go home if no tests were being done as if I am trying to recover I am better at home with my humidifiers for my dry and my comfey bed and couch and privacy. So I asked staff if he was still coming at some point. And I had asked if tests were still planned as I had been bought food. I got alot of I dont know. I finally said in a perfectly nice way that if my doc wasnt gonna do any tests I would like to do home. I could have added more by saying I would be more comfortable there. I wasnt snippy or anything.

The neuro that came to consult was furious that I had told my doc that if he didnt show up I was leaving.........Oh my gosh!! I had to yell back at him as he was yelling at me making me out to be an ogre! I said I love my doc I would never do him such a thing. He was so furious we never really did any exam and even after I told him I hadnt done that he was argumentative. I finally looked him straight in the eyes and yelled "all I want is my life back, my family my job!!" That turned it around. He heard me and believed I wasnt who he had thought. He then suggested that I give up on the university and go to the state capital city or Kansas City for a fresh consult.

Sorry you had this.

Annie59

Hi 59- I just returned from kansas city - Landon Center for the Aging
where I saw a wonderful MG specialist and thoroughly enjoyed this doctor. He has specialized in MG for over 35 years. Go the the Kansas University Medical center and look up bios on the doctors there at the neurology dept. I have even seen the MS specialist there who has a fantastic bio.

My favorite part was when he said - in your case, it will be necessary to look outside of the box. Hanging around in the box will not get you diagnosed!! Hahah - that was cute. He ran blood tests, sent some off to Mayo, did full emg over entire body (I hate this electrocution test! I refused when at the end they wanted to d the throat area-They were very gracious and respectful and comply with my limitation of "I'VE HAD ENUF FOR ONE DAY!) - rescheduled for MRI of chest (thymus and lungs), single fiber exam-spinal tap-changed some meds and rescheduled for another appt.

I even mentioned why other neuro "had" to send me on to him - due to loss of bladder. He didn't blink an eye that the other neuro had botched the job and simply said "We will look outside the box and will get a diagnosis!"

Whee.

A very productive trip - exhausting but great docs there. I encourage you to look into this area here in kansas.

Good luck!